C/O 20 Belvoir Drive
Barton Seagrave
Kettering
Northants
NN15 6RA
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Ben S's Parents/Guardians

Anita

Ben S's Siblings

Lucy 15/07/2001 likes dancing and High School Musical. Zoe 23/02/2005 likes Peppa Pig.

Ben S's Interests

Playing on the computer, Lego, singing, learning to play the drums.

Ben S's Favourite Colour

Red

Is Ben S able to read?

Yes

Is Ben S able to use hands?

Yes

Is Ben S visually/hearing impaired?

No

Does Ben S suffer from any developmental delay?

No

Story written 2009

Ben was diagnosed with Acute Lymphoblastic Leukaemia on March 15th 2007. It came as a complete shock as he had been going to school on the days leading up to his diagnosis. When Ben was diagnosed he was 95% full of the Leukaemia blast cells and his white count was very very high. A week later and he might not have been with us! He was then slow to respond to treatment and because of this he is at a high risk of the illness coming back and had to have the highest possible level of treatment.

Ben had to have intensive chemotherapy for a whole year and was in and out of hospital with lots of infections. He was even in hospital for the whole week of Christmas 07 which was very disappointing for him, his Mum and Dad, and his sisters.

In March 2008 Ben went onto Maintenance Chemotherapy which means he has daily chemo medicines for 2 1/2 more years. He has steroids every 4 weeks, a medicine into his Hickman line every 4 weeks at hospital, and a Lumbar Puncture every 12 weeks.

In June 2008, Ben was also diagnosed with a bone condition called Avascular Necrosis which has been caused by the steroids. The blood supply has been cut to his bones causing thinning of the bones. Untreated, Ben could have been faced with knee and hip replacements in the future. Ben has the condition in both knees and his right shoulder and there are also slight changes in his ankles. Ben has a lot of pain in his ankles and back. He also suffers from severe headaches and chest pains. His steroids had to be changed to a lower strength one, which caused us some anxiety, as being a high risk of relapse the last thing we wanted was to have the treatment protocol changed. There are still no guarantees that the new steroid will be any better and Ben's condition will be monitored with more MRI scans in the future.

Recently Ben has been very low and emotional due to his pains and also maybe being that much older and understanding the implications of his condition a little more. He has had some problems at school, such as his friends asking lots of questions about the condition. He also has to miss a lot of school because of the pains and general feelings of being unwell and also gets very tired easily.

Update 18th August 2010

We are happy for you to move Ben on now as we have been privileged to receive more than our fair share of post!!

Many many thanks and I hope everyone will still continue to follow Ben's progress through his journal! xxx

Update 26th July 2010

I’m so sorry for the late response/update. I don't seem to have had any time to reply due to it being a busy end of term etc. We seem to have had many ups and downs over the past couple of months.

On 15th June we visited Birmingham Children's Hospital and were told Ben had some degree of Liver disease. It was horrendous and very upsetting for the whole family. Ben took it really badly and was very emotional for a few weeks. The girls were also affected and seemed to develop challenging behaviour. We also had to wait a few weeks for the final letter about how serious or not the consultant thinks the disease is. When the letter finally arrived the news was pretty much as we expected. The letter said Ben has chemo induced liver dysfunction. The scan showed that the disease is thankfully not advanced but he still may need an endoscopy and biopsy at a later date. The spleen and also kidneys are enlarged. The consultant will see Ben again in 6 months and will repeat the tests and scans. Sadly it looks as though we will be visiting Birmingham for some years to come. Not brilliant news so close to the end of Ben's treatment.

So that has occupied much of my mind for the past few weeks. There have been good times too though. Despite only managing less than 79% of schooling over the last year (75% and 50% the previous two years) Ben managed to get Level 5 in his SATs (the level above what is expected for his age!!). Ben had his Junior school leavers assembly last Friday. Every child got a dictionary presented to them. At the end they gave out a special trophy - they choose one child each year out of 120!! This year the staff unanimously chose Ben!! The speech the Head gave about Ben was so emotional. How he has maintained a high level of achievement despite having so many setbacks and how he dealswith it all with such bravery. We are so very proud of him!!

So August will see the end of his daily chemotherapy. On August 3rd he will have his last LP and bone marrow aspirate taken and treatment will stop!! We will be given the results on August 18th. All being well we will then await a date for an operation for his Hickman Line to be taken out. So, exciting but anxious times ahead!!

Update 2nd June 2010

Well May saw a steady flow of gifts - especially for the girls which is always nice and Ben has received many lovely letters including group letters from different schools.

I thought May had been quite a good month until I read back through our journal and actually it was very up and down. Ben has lost two hamsters within the same month. Goodness knows what we do to them - very strange as the girls hamster, Harry, is still doing very well and continues to be very active. Ben was devastated - especially the
second time and I'm not sure if he can face getting another one.

Good news was Ben went to London with Jason for a charity wish to see the Blue Peter team. It was a complete surprise for him and he had a fantastic day. He met the team and also the celebrities from Junior Masterchef. He got to look round the studios and also had his dinner out and got some gifts from Hamleys for him and the girls. Many thanks to Russell at Wishes for Kids from Leicester.

Ben has had quite a few tummy pains again this month and we got his appointment date through for his scan at Birmingham. The letter didn't make for fun reading as it seemed to be assuming that Ben already has the liver disease we thought he was to be tested for. So a bit worrying for us once again.

Ben also sat his SATs tests in May and at least he managed to be well that week. He has also played in yet more music contests with music school and school orchestra.

Zoe and I have had periods of illness in May. I lost my voice and felt very unwell a couple of weeks back and then Zoe had a nasty temperature virus last week and had 3 days off school. We also had two pieces of bad news in May. One being the sad news that Nicole passed away (former Post Pal). We have followed her story for some time and read both of her books and the sudden sad news was such a shock to us all. Our hearts go out to her Mum and brother and her close friends. We also have a very good friend who was also diagnosed with Leukaemia in May having already fought a Wilms tumour three years ago. We are truly gutted for her as she starts a new battle at the age of 7 and are rooting for her all the way. So sadly a stark reminder of how up and down a cancer journey can be.

Ben is presently sporting a very swollen, grazed nose, having had a fight with a fence! He fell off his bike into the fence. He was very brave and I think quite proud of having a normal boy injury for a change - but it does look very sore!!

Many thanks to everyone for still thinking about Ben and his sisters!!

Update 2nd May 2010

Wow - I think it is impossible to estimate how many cards/letters and gifts Ben has received this month!! And as for e-mails… well it has become a full time job replying to them all. Thank you to anyone who has sent Ben anything, including all the wonderful gifts, cards, letters and e-mails. And special thanks to Russell Howard for bringing so much attention to Post Pals - but the biggest thanks go to Post Pals themselves for all the wonderful work they do!!

As for Ben, he was in hospital briefly in the half term holiday as he had a chest infection that sent his temperature up. So he had antibiotics for that. Since his visit Zoe has been struggling emotionally. She was hysterical when he went in as he hadn't been admitted for nearly a year so she found it really hard to handle. She has been very tearful and clingy since.

Ben has also been referred to Birmingham hospital and we are waiting for an appointment. They want him to have tests on his spleen/liver and tummy so it’s an anxious wait for that. His spleen is often enlarged which eats away at his platelets (hence all his bruising) and his liver has struggled with the chemo all the way along and he gets tummy pains often. So we await a trip to Birmingham. Oh and he had his 36th Lumbar Puncture last week. So not an easy month - but then when is it ever?

Thanks again everyone for your continued interest and support!!

Oh and I nearly forgot (how could I?) that Ben's Dad - Jason - ran the London Marathon last Sunday to raise money for Children with Leukaemia. He completed it in 5 hours 39 minutes - despite getting a migraine at 22 miles which affected his sight. We were really proud of him and Ben coped really well following him around London, although his ankles were very sore at the end of the weekend and he had the Monday off school as he was so tired - it was very emotional when Ben met up with his Daddy at the end!! Thanks to anyone who sponsored Jason - we really appreciate it. And thanks to everyone who has left a message on Ben's website!

Update 10th April 2010

Many thanks once again for the wonderful gifts last month. Special thanks to Maria and Michael who sent me a lovely Mother's Day parcel - how very kind!! The children received letters and parcels including some lovely books for Zoe and stickers for Lucy. Lucy also received a very special High School Musical card with her name on which she loved!! Ben also received a chocolate parcel for Easter - Yummy!! So another wonderful month - thanks to all our Post Pal friends.

March was an amazingly busy month for our family as we had many events to attend. Ben took part in his first band contest on the drums and played really well being less nervous than me!! There were lots of extra rehearsals leading up to the contest on March 13th. During the same weekend Lucy went to stay in Govilon - Wales, for four days on a school trip. The 15th March was the third year anniversary of Ben's diagnosis - an emotional time. Then the girls were in a dancing display the following weekend - which meant a lot of hours backstage for me. It was a lovely show though and the girls did really well. The same weekend Ben was in a concert with music school and in the Music for Youth competition with school. Then the following weekend Lucy played in another music school concert and Ben and Lucy sang in a concert with their Junior choir in London and Jason and I enjoyed a day trip watching them.

All of this took its toll on Ben and by the end of the school term he was really struggling with tiredness and had a few days off school. He was also very emotional and found he was forgetting things easily and losing concentration at school. He also started to worry about his energy levels and that he couldn't keep up with his friends in sports activities etc and is generally fed up with all the medicine and his Hickman Line. So for this reason I was really glad to see the back of March as we were all well and truly ready for a two week break from school and all our different activities.

Ben is still up and down emotionally and it seems to be affecting his behaviour for the first time. He has been quite challenging to say the least which is not like him - I guess just his way of letting his frustration out and probably well overdue when you consider he has been fighting for three years. Lets hope April is a little kinder to him!!

Update 4th March 2010

We have had a wonderful month of receiving presents and cards from Post Pals. The children all enjoyed getting their Valentines packages, Zoe also got a hedgehog this month, Ben some sweets and a squidgy caterpillar, they all received some wonderful stickers which had their names on along with pictures of their favourite characters (I know Ben e-mailed the lady concerned to thank her!), Ben received a collection of new wiggly bags and he also got the most wonderful gift of all - a pair of drumsticks that had been handmade and have his name inscribed on them!! Oh and I nearly forgot that Zoe also had some lovely birthday cards and some Peppa Pig presents. As always though, I am really bad at keeping addresses to reply to, so I really hope the people that send the gifts read Ben's update. We really do appreciate everything you do and thank you so much for putting a smile on my wonderful children's faces!!!

Ben has actually had a good month for a change! I hope I am not tempting fate? He has been feeling well with no cough or aches and pains. We have had lots of birthdays as my Dad's is in February as well as Zoe's and it’s also my Mum's and my sister's. So we always have a busy and expensive month! We had a lovely half term and were busy with various outings and having friends over. We were also lucky enough to go and see X Factor Live in Birmingham (despite the snow) thanks to a Children's Cancer charity who gave us the tickets.

My sister - Aunty Di - held an open day last weekend to raise money for Children with Leukaemia and she raised over £200 which was wonderful and it was a lovely day. Despite all the fun though, I have found this month quite challenging emotionally. We have the anniversary of Ben's diagnosis coming up which is always a difficult time. We also had to hold our breath as we waited for the decision on Ben's high school place to be confirmed - thankfully he got his first choice, but it was an anxious wait. So I'm feeling very tired and anxious. Ben has been well though so I should be grateful for that.

Anyway, thanks to all the wonderful people out there who send gifts to children simply because they have read about them on the computer! Bless you all.

Update 7th February 2010

Sorry for the slow reply to update this month but things have been a bit hectic here. I really can't remember the last time Ben had a week when he was well. This month we have had yet another chest infection which meant more antibiotics, a nasty virus which resulted in him having a rash on his face every evening for a week, and a Lumbar Puncture this week which left him struggling with back pain followed by severe stomach pains that left him screaming for most of the night. He has been struggling with one thing or another for months now - it just seems to go on and on!!

Anyway something on a positive note is that we held a concert last night to raise money for Children with Leukaemia. Jason and I play in a brass band and this year Ben joined the band as the percussionist. He also sings in a junior choir so he organised a concert with the band and his choir. We sold over 200 tickets and raised over £700 for Children with Leukaemia. Ben was amazing and everyone commented on his percussion skills and he and Lucy both sang solos and we were very proud of them both.

I am really sorry but I am really bad at keeping track of how many letters and presents the children have been receiving but rest assured that they are all truly appreciated and really bring a smile to their faces. Zoe is sat beside me as I type making an Easter Pouch Necklace that she got this morning in a Valentines package. So they really do love what they get and it makes us all very happy. A silver lining on our very cloudy days!!

Update 10th January 2010

I really couldn't keep track of how many cards and gifts the children received last month as there were so many and I cannot thank everyone enough who sent them something!! They loved their Christmas Elf boxes and everything else they received - thank you, thank you, thank you!!

As for his health, Ben ended up back on antibiotics just before Christmas for his chest again. We were really worried that we were on a slippery downhill slope again - but thankfully the two week supply seemed to do the trick and he is not coughing at the moment. Since then though, he hasn't really been 100%. He seems to be getting a lot of headaches and is very tired but struggles to get to sleep. He has had zero neutrphils the past two weeks so hasn't been having any chemo and has had an emotional day today. He also looks like he might be starting with a Hickman Line Infection so not such a good start to the New Year.

Despite all this, Christmas was good, as we were in our new house having moved in on 21st December!! Ben got his electric drum kit, Lucy a TV and Zoe a camera - so Santa was indeed very generous again this year!!

2010 should hopefully see Ben come to the end of his treatment and although we know this won't be a quick end to all the stress, we still look forward to the end of the daily medicine routine. So, with that in mind, we wish everyone a Happy New Year and look forward to keeping you informed about Ben's progress this year! 

Update 6th December 2009

In November we all had flu jabs and the dreaded swine flu jabs!! Somehow I ended up with the biggest bruise – even Ben with low platelets couldn’t match mine. Ben had another appointment with CAMS (Children and Adolescent Mental Health Service) which went well and he was discharged – although we can contact them if we need to. He will continue to attend his monthly support group at hospital. He had an appointment with the chest specialist and an immunologist. Ben has something called pan hypogammaglobulinaemia – which basically means his immunity levels are dangerously low and he has poor antibody levels to specific infections. The immunologist wanted Ben to have his immunisations again to protect him from dangerous infections but of course our consultant said this could not happen until treatment is finished. The chest specialist wants his lung function monitored carefully because of the poor levels in the past. And basically Ben will have antibiotics at the slightest sign of any infection and will take them for longer than would normally be prescribed to prevent anything serious occurring. At the moment Ben still has a dry cough which we monitor carefully.

We are all looking forward to December and the festive activities that this month brings. We are looking forward to the Ward Christmas Party on the 6th and also to (hopefully) moving house at the end of the month!

The parcels that arrived were mostly for Zoe this month. She had a lovely shoebox with wrapped presents inside which she loved. Thank you for your time in selecting and wrapping presents for the children - it really means a lot. We have also started to receive some Christmas cards with some really special messages inside, including letters from Rudolf for Zoe. Again, the time spent on such special thoughts is really appreciated!!

Update 1st November 2009

We have had quite a stressful month really. Ben was still fighting the nasty chest infection that just wouldn't go away and he underwent many tests and even had a chest operation to draw mucus directly from the chest to be tested. Eventually the chest improved, although still not completely. Due to the chest complaint and also his blood counts that were dropping all over the place, Ben's consultant was beginning to think the leukaemia was coming back. So Ben had to have a bone marrow aspiration just in case. Thankfully after holding fingers and toes crossed and saying lots of prayers the results came back and Ben is still in remission!! On the last clinic appointment Ben was finally taken off antibiotics for his chest - but then went straight back on them as he now has an infection at his Hickman Line entry point!! He will also need antibiotics for the first sign of a wet cough over the next few months - so not out of the woods yet.

Also this month, Ben trapped his little finger in the car door - but thankfully it was not broken but very badly bruised. He has also had many bruises over his body - due to the low platelet count. He also managed to have his flu jab once the chest was finally better - but obviously we are very anxious about all the illness that is going around and particularly the swine flu. Very tempting to wrap him in cotton wool and not send him to school but of course we can't do that. We just have to monitor the situation carefully and keep a close eye on Ben.

Many thanks for all the lovely cards and gifts the children have received this month - it goes a little way in helping us to get through!!

Ben and the girls have received some lovely supportive cards this month. Many thanks. Ben and both girls have also received some lovely packages this month. They all got a parcel each filled with Lego, sweets, puzzles, cress making kits, soft toys and books. They all enjoyed these very much. Many thanks to whoever sent them - as in their excitement the sender address got ripped and we couldn't send a thank you. Lucy also received a High School Musical calendar which she adored and Zoe was sent a Peppa Pig package which again she loved. We have also received some lovely thoughtful e-mails this month so thanks also for those.

Update 3rd October 2009

The chest problems continue and Ben had a CT scan about a week ago. This showed inflammation in the outer bronchial tubes probably related to an infection or virus recent or past. The consultant was very interested that Ben was born 6 weeks premature and had a history of chest problems which resulted in an x-ray at 18 months showing an infection as a shadow on his lung. He said children that were born prematurely often go on to have chest problems.

Ben is to have a Lumbar Puncture next week (which is now 6 weeks overdue) and they will also take a swab from his chest while he is asleep. They are going to see about boosting Ben's immunity with some sort of transfusion every few weeks and are also going to give him an antibiotic for three days every week which will last for the whole week. They completed an inhaler test which showed a slight improvement so he now has an inhaler to use four times a day but this is just to help - not as a cure. And lastly they did a special blood test to see if he has an infection in his blood as his blood counts seem to be all over the place at the moment and are particularly low. On top of all this the same day as all the tests he trapped his finger in the car door and ended up with a very bruised and swollen finger! So it wasn’t a wonderful month. Ben also ended up missing lots of school due to so many hospital appointments and also because swine flu hit his school. They had three confirmed cases so we took both him and Lucy out for a few days to see how things developed as it just wasn't worth the risk of Ben catching that - particularly with his chest at the moment. So we’re glad to see the back of September again!

Ben's dad (Jason) and Ben's sister (Lucy) also ran in the Great North Run earlier this month. Lucy completed 1 mile in 9mins 40 seconds and Jason completed 13 miles in 2 hours 41 minutes. We are very proud of them both and they did it to raise money for children with Leukaemia!!

Thank you for the cards sent and many thanks for Zoe's pink dog and a collection of sweets for Ben!

Update 31st August 2009

The postman has been much busier this month as it was Ben's birthday and he has received lots of super cards - thank you to everyone who sent them.

Ben had seemed really well over the last couple of months but this month he had a bit of a setback again. During the summer holidays he had already taken two different lots of antibiotics for a cough that wouldn't go away. One of these courses lasted for two weeks. But two weeks ago Ben went into hospital for a routine 12 weekly Lumbar Puncture but they wouldn't put him to sleep as his chest still sounded crackly. This resulted in a lot of tests being started on Ben including lots of blood tests and a lung function test which Ben scored very low on. Due to the low result, Ben was put back on antibiotics but this time for four weeks. He is also possibly going to have some viral tests and a swab taken from inside his chest next time Ben is put to sleep. So a little bit worrying once again, especially as once or twice he has complained of slight chest pains. So we will see what the tests show!

Despite this we have managed a few days away to Pagham near Chichester which we all enjoyed and right at the end of the month we also moved house. Never a dull moment!

Ben is now a pen pal with Jack M, a moved on Pal who you helped a couple of years ago but has now finished treatment. They are the same age and are enjoying sharing their news.

Also, this month my three all received some lovely flannels that were wrapped up and decorated to look like lollipops from Japan. Thank you very much whoever sent those!

Many thanks again for any post we have received!

Update 3rd August 2009

Ben is thankfully very well at the moment. Not being on steroids is certainly agreeing with him! For the first time in two and a half years he has been able to go on his bike for quite long rides and not have any ankle pain. He is also not as steroid grumpy, which is a big improvement.

Ben had his heart checked over this month by a cardiologist. He had an echo taken and an ECG. Thankfully all is fine and the racing heart seemed to have been because of an external influence (the steroids) rather than something wrong with the heart itself. He will continue to have his heart checked every year for a long time yet.

So at the moment we are able to enjoy the summer holidays! He still has a couple of appointments during the summer including a clinic appointment, his support group, two psychologist appointments and a Lumbar Puncture later this month. So still a few trips to Leicester but fingers crossed he won't be admitted!! Other than that we will just be chilling out at home and enjoying the rest from school with a few day trips thrown in here and there!

Ben has continued to receive a steady flow of cards and postcards and the odd letter for him and also me which is very kind. Ben also got a lovely parcel in the post which was a pirate activity pack from a little girl called Lydia. That was really very kind and he loved it - thank you Lydia!! We also received a few birthday cards for Lucy as her birthday was on the 15th July so that was very special for her - thank you.

Update 30th June 2009

Ben has had a reasonable month, although he has had a persistent cough for many weeks now that just won't go away. We have tried various medicines and inhalers and last week the Doctor put him on a steriod inhaler to see if that would work. So let’s keep fingers crossed as to be honest it has been getting us all down and making us lose sleep!

He has pretty much managed full time school - although he was off on Monday of this week with a tummy ache. He has missed school for the odd medical appointments as always too. He had an eye appointment and an orthotics appointment to get his feet measured for some insoles in his shoes to correct his walking. He also has the usual monthly outpatients appointment for more chemo and a full check up. He doesn't much like the hot weather and hates being out in the sun for too long, so this week has been trying for him.

In his personal life this month, he was confirmed at church - so that was a really special day for him. He also had a special Boy's Brigade Battalion service on Sunday where he did a psalm reading - and he read it beautifully, making us all very proud. So a couple of occasions this month that have reminded us what a special and popular little boy Ben really is!!

Many thanks for the continuing stream of cards for Ben and his sisters. Ben really liked his chemo duck too, thanks!

Update 29th May 2009

Ben is well at present, although he had another lumbar pucture yesterday so his back is a bit sore today. He has had a good half term playing inside and out with his sisters. He had his first appointment with the psychologist last week and he enjoyed talking to him. He is still very up and down emotionally but we just take each day as it comes.

Thank you again for all the post Ben and his sisters have received in his first month as a Post Pal. They have all really enjoyed getting post. The girls have both had a couple of letter each and the children have also received beautiful hand made cards. Thank you to everyone at Post Pals, what a wonderful idea and charity.

Update 17th May 2009

We have had a difficult few months since Christmas. At the end of January Ben was rushed into hospital with a racing heart. He had lots of tests including ECG's and echo's on his heart and he also had a liver ultrasound as that was also not functioning correctly. After much discussion with the oncologists it was decided that it was a possible, although very rare, side effect from the steroids. Ben had already had his steroid changed last year because of the bone condition he developed (which was also rare) and now it was decided that the new steroid was affecting him badly too! The oncologist and professors decided to let Ben have 3 months off the steroids. During this time Ben began to do more physically because he wasn't feeling as tired or as in as much pain as he would normally be on steroids. He also went to school more. Of course this made him all the more anxious about which steroid he would go back on to.

Anyway, in April it was decided that Ben would not go back onto any of the steroids as it was decided as too risky. One steroid could have caused fatal problems with his heart and the other was doing too much damage to his bones. This also upset Ben as although he hates taking the steroids he was well aware of the implications of not taking the steroids. This has been a huge worry for Jason and me as Ben is a high risk of relapse - so therefore not having the full treatment protocol is far from ideal. Ben still has 14 months of treatment to go so we will be very concerned about the Leukaemia coming back!

This month Ben was also admitted for a week after fainting at school. He once again had his heart checked with ECG's and 24 hour heart monitors and we are waiting for results. Ben had a hickman line infection which is still being treated at home with intravenous antibiotics once a day administered by the community nurses. He has to go back to hospital next week for more blood to be taken to check that the infection has gone. He will also have his first appointment with the psychologist next week in an attempt to help him a little with his emotions. Ben gets very anxious about things and his emotions are up and down like a yo-yo. Although he tends to save this up for Mummy and Daddy. Everyone else still gets to see the brave, happy, smiling Ben who always wins over their hearts!

We would just like to thank everyone who has already sent Ben and his sisters post. Some of the cards and the book he was sent couldn't have come at a better time as he was in hospital. It was nice for the girls to receive post too as they find it difficult when Ben is in hospital as they miss him and worry about him lots. So thank you all!